Wish me luck with parking!

[travelitis]

My rheumatologist diagnosed me with fibromyalgia and arthritis in my knees and back. Several years ago I had a reconstructive surgery of both feet, and I have a walking disability. My rheumatologist understands I live my life in varying degrees of pain, but he has stopped signing for parking permits for any of his patients. He tells everyone to go to their GP. Great! My GP got mad when I mentioned I thought my problem might be fibromyalgia. It was a diagnosis he was unwilling to consider and said if the other doc wanted to diagnose that, fine, but everyone thinks they have it...yada yada yada. In 2 sleeps (how I count days for my 4 yr. old) I have to ask the GP to sign so I can park at WDW with the ECV and no fear of getting ticketed. I also need it for when my dh goes out-of-town on a couple of 2 week long business trips. I don't know what it is about me, maybe I seem too young and healthy to need it. I got turned down by a doc in MN who knew I was unable to walk into a store to get to an ECV because it wasn't life threatening. All I asked was for a temp. permit until my condition had time to improve. I didn't even have a pass when both legs were in casts and I couldn't stand. So.....after a whole lot of venting my frustration...send me plenty of pixie dust. I'm SO TIRED of not being able to go grocery shop or just run into WalMart because it hurts too much to do all that walking! I'm not like that every day, but I have days like that every month. I walk whenever I can to get the exercise and would never dream of using that placard unless I needed it.
OK, maybe I should take those meds now! lol!

 

[Nanajo1]

It's amazing how different MDs view the H/P placards. It seems to me some areas of the country all you have to do is sneeze and the MD will okay it, in others you have to be literally crawling to get one. I'm sorry you are having such a hard time. I know it is not my business but why stay with a MD who doesn't support your needs? Even if the MD refuses to diagnose fibro why can't he accommodate your symptoms with a placard?
Pixie dust coming your way.

 

[travelitis]

Thanks! The absurdity of this is I think my GP is more likely to grant it for the WDW vacation parking situation than for the fibro.

We are an active duty military family in a town of 18,000. That means there's no military facility for our healthcare and we have to go to private practices. Our choices are rather limited, and the insurance has him listed as our GP. That's the bottom line.

My doc does know I'm in pain and is willing to keep me supplied with all the vicodin I want to eat, but that's probably because I take it only if I really need it. In the past I've struck out with my foot surgeon who told me my walking disability was permanent, my podiatrist who knew I couldn't walk from the parking lot into a store without excruciating pain, and my rheumatologist (boy his receptionist was furious he wouldn't bend his rules on this one). My GP who doesn't like fibro is my only hope at this point. The only times I've asked I really needed it to be able to function. Thankfully I had a dh to run the errands. I know there are people worse off than I am, but there are days I can't go buy a gal. of milk without a placard and an ECV.

 

[cupcake]

How awful, please hang in there. That's got to be so hard.

One extra large puff of pixie dust coming your way!!!

hugs, Cupcake

 

[SueM in MN]

Pixie dust from me too.
At WDW, if you are not able to get a parking permit, tell each parking lot CM that you encounter that you have na ecv and don't have a prking permit. They DO save some spots at the front at the end of rows for people in your situation. If you are lucky, you will get there when there are still pleanty of spots left.
Also, if you are staying on site, almost all the buses have wheelchair lifts and tiedowns to accomidate ecvs/wheelchairs. Although some people on the DIS complain a lot about the buses, we have had few problems with using the bus service. Even if you don't want to ride the buses, it is the best way to get to MK since you are dropped off right by the park entrance instaed of having to ride the monorail or boats form the TTC.

 

[travelitis]

Thanks, Sue and cupcake. I didn't know that if I told them I didn't have a permit they had other parking designated. When we told them we had an ECV they automatically herded us to the disabled lot. This is good news, because after my Rheumatologist wouldn't bend his no placard rule I was starting to fret. Imagine parking a mile from the park and driving the ECV while dh and 3 kids take the tram. Now that would be convenient - NOT! I'd probably forget where the stupid car was in my fibrofog, and he'd have to drive around looking for me.

 

[SueM in MN]

I should have added: Tell them you don't have a handicapped parking permit. If you don't tell them, they probably assume that you do.

 

[travelitis]

I had to resched my doc appt. because I had a sick kid. I'll hit him up tuesday. Maybe I'll be able to get the rheumatologist to fax him with my diagnosis. Most people I've chatted with at www.fibrohugs.com have placards. Some are worse off than me and some are better. I dread asking considering I really thought one of the other docs would say yes.

 

[Nanajo1]

PD for you on Tues. I know you don't want to antagonize the MD but but if he refuses the placard could you ask him why? I feel for you. It is difficult when your pain is not recognized or is belittled. More PD coming your way.

 

[mamajoan]

I am sorry to hear that you are in need and having difficulty getting the help you need from your MD.

just a tad off the subject but...it may make you smile

I believe in DOCTOR HELL...

I believe that if a Doc withholds medication or treatment from a patient for his own personal reasons that he will go to Doctor hell when he dies.

You see in my mind.. Doctor Hell is when the Doctor gets the same painful disease and the medication or treatment is within his view but just out of reach..
==============================================

Fibromyalgia is sometimes a catch all diagnosis used when a doc can not give name to a painful problem. That is why some GP's shake their heads when they hear that diagnosis. There are specific indicatiors for correctly diagnosing fibromyalgia, I hope your GP will note that you have these indicators therefore agreeing that you indeed do have Fibro. I hope you get your DP placard as soon as possible.

 

[sneezy1956]

Oh I love that....next time my doctor tells me it can't be that painful I will think of him in Dr. Hell

 

[TaraG]

I know what you mean! We're going to WDW in December, just a week after I finish radiation for a recurrence of ovarian cancer. I have a hard enough time walking through the grocery store! But, we're going for my 5 y/o's birthday. I'm planning on renting a wheel chair if I need it. Sorry if I sound "duh", but what's an ECV? Having a radiation moment, sorry.

 

[SueM in MN]

An ECV is short for "electric convenience vehicle", which is not a really good name for it, since for many people it's more like a necessity than a convenience.
It's also called a motorized scooter. Having a 5 year old, you are probably thinking of the type of scooter he would ride with a motor, but it looks sort of like a comfy office chair on a wheeled platform. They usually are steered with a yoke, sort of like a bicycle handlebar. I've been told they are easy to use (DD has her won wheelchair, so we don't rent one). ECVs are usually used by people who can walk, but just not long distances. They are available for rent at the WDW parks (in limited quantitites) and from some off-site medical supply vendors.
Here's a list of the vendors DIS readers have psoted they rented from:
Care Medical:
http://www.caremedicalequipment.com/

Walker Mobility:
1-888-726-6837
www.walkermobility.com

RANDY'S Mobility is in Kissimmee 407-892-4777
http://randysmobility.com/

Colonial Medical
http://www.colonialmed.com/about_cms.html

If you go to their websites, you will see pictures of ECVs.

 

[dclfun]

I'm late to this thread but wanted to wish you good luck getting the placard from your GP as it sounds like you certainly deserve it. What an ordeal! When we first moved to Fla. I rode in to the dept. of motor vehicles in my electric wheelchair to get a local placard. In La. mine was our license plate. They insisted I see a Dr. first to get a form filled out even though I was afraid of getting ticketed since I HAD to park in a h/c spot due to my lift and knew no local Dr.s yet to see. Sometimes the rules really don't fit the situation, which sounds like what you're going through too. ---Kathy

 

[dclfun]

I'm late to this thread but wanted to wish you good luck getting the placard from your GP as it sounds like you certainly deserve it. What an ordeal! When we first moved to Fla. I rode in to the dept. of motor vehicles in my electric wheelchair to get a local placard. In La. mine was our license plate. They insisted I see a Dr. first to get a form filled out even though I was afraid of getting ticketed since I HAD to park in a h/c spot due to my lift and knew no local Dr.s yet to see. Sometimes the rules really don't fit the situation, which sounds like what you're going through too. ---Kathy

 

[tink2dw]

In Oregon you can't get a placard unless you have bad heart trouble or iritable bowel symdrom. Walking problem do not count!! Go figure??

 

[SueM in MN]

One of the points of the ADA was to get all the states to use the same definitions and guidelines for issuing disability parking permits. I know some didn't (and some doctors who should know have no idea what the law actually says in their state). I was curious about Oregon's law since I had never noticed irritable bowel syndrome as a specific point before, so I looked it up and here's what it says:
These definitions of a “disabled person” are found in Oregon Revised Statute (ORS) 801.235.
A person who has severely limited mobility because of paralysis or the loss of use of some or all of the person’s
legs or arms;
A person who is affected by loss of vision or substantial loss of visual acuity or visual field beyond correction; or
A person who has any other disability that prevents the person from walking without the use of an assistive
device, or that causes the person to be unable to walk more than 200 feet, including but not necessarily limited to:
a) Chronic heart condition;
b) Emphysema;
c) Arthritis;
d) Rheumatism; or
e) Ulcerative colitis or related chronic bowel disorder.

 

[tammyh-oregon]

Placards in Oregon

I use a wheelchair on occasion and a cane sometimes but most times in my runs to the store I am in and out (preplanning) so I don't use anything to aid me. I have a placard for when I have to use the cane or the wheelchair and don't use it unless I have them. I got my doctor to fill out the forms and just went to DMV. No questions asked. When I renewed my license I asked about the placard renewal, I didn't even have to fill out a new form they just issued me the placard for the next 4 years.

Tink2dw, it sounds more like your doctor is not reading the whole placard issuance rules or doesn't want to issue them something like the OP's situation (they just don't do them for whatever reason) I would just keep trying. Get 2 blank forms and highlight what applies to your situation and discuss those sections with the doctor and then have the blank one ready for him sign all filled out with your information. Maybe if you make it real easy for him he will see the error of his ways. Good luck

 

[travelitis]

Thanks for the encouragement. I go tomorrow, but I've calmed down about my doc's attitude. I really don't think there's any way this doc will sign, because I had him sign a waiver so I could scuba last summer. The day after I went diving I really paid for it, too. I don't think this doc is going to want to hear that the rheumatologist agreed with me and not him. Yes, I have the specific symptoms and other diseases have been ruled out. If WDW does have spaces up front we could use, that would be fine. When we went in 2002 they didn't offer that to me. I may still try, but after taking my 10 yr. old ds in for foot and hip pain today, I'm chickening out. I managed to recouperate from foot surgery w/out a placard, and I couldn't do anything but ride in a chair or crawl. It's inconvenient for me, but I'll just suck it up.

 

[sneezy1956]

I really think your GP needs an attitude adjustment. My GP actually offered me the Handicap card. I don't need it any place but work. It's a 3 block walk from where I'm supposed to park to where I work.

With the tag I only have to walk about 1/2 a block which is a big knee saver.

I hope your GP comes around.